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 Table of Contents  
ORIGINAL ARTICLE
Year : 2017  |  Volume : 30  |  Issue : 3  |  Page : 85-93

Intervention program to improve feeding, swallowing, and nutritional problems in children with cerebral palsy


1 Department of Pediatrics, Alexandria Medical Faculty, Alexandria University, Alexandria, Egypt
2 Department of Physical Medicine, Rheumatology and Rehabilitation, Alexandria University Hospitals, Alexandria, Egypt

Date of Submission10-Aug-2017
Date of Acceptance15-Sep-2017
Date of Web Publication20-Apr-2018

Correspondence Address:
Omneya M Omar
Department of Pediatrics, Alexandria Medical Faculty, Alexandria University, Alexandria 21321
Egypt
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/AJOP.AJOP_22_17

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  Abstract 


Background Most children with cerebral palsy (CP) have feeding problems, which lead to long-term malnutrition and respiratory disease, decreasing the quality of life of children and caregivers and causing early mortality. In developed countries with sufficient resources, high-cost and low-cost medical interventions, ranging from gastrostomy tube feeding to parent training, are available. In Egypt, the former is not widely available, and the latter is both scarce and its effectiveness not evaluated.
Aim The study aimed to design and implement a training program to evaluate the effectiveness of a training program, to improve the feeding practices of caregivers of children with CP, to observe the effect on the level of nutritional status, feeding skills, and distress caused during feeding.
Patients and methods From Alexandria University Children’s Hospital and its outpatient clinics (neurology and physical medicine), 20 caregivers and their children aged 1–5 years with moderate-severe CP (Gross Motor Fine Classification System III–V) and feeding difficulties were invited to a 10-session training program over 5 days (two sessions/day). Before and after training measures (quantitative and qualitative) were taken during the evaluation session of all children in addition to giving brief advice for caregivers, and follow-up for 3 months was done to evaluate the effect of education on performance and skills of the caregivers.
Results The percentage of children with appropriate feeding position was significantly higher in final evaluation (66.7%) compared with preliminary evaluation (5%), and the median meal time was significantly shorter in final evaluation (42.5 min) compared with preliminary evaluation (60 min). The percentage of children and their caregivers gaining new feeding skills was significantly higher in final evaluation (38.9%) compared with preliminary evaluation (0%) (P=0.016). The percentage of children using the utensils appropriately was significantly higher in final evaluation (66.7%) compared with preliminary evaluation (15%) (P=0.004). There was no significant difference in the number of feeding problems, eating and drinking ability classification system level, and the mean weight for age Z score between studied children in preliminary and final evaluations.
Conclusion The training program has a beneficial effect on improving feeding practices of children with CP and their caregivers after ten training sessions, with positive consequences for both child and caregiver. Methods of providing cheap food supplementation need to be studied, and further steps must be taken to ensure that services have the motivation and capacity to address this area of need.

Keywords: cerebral palsy, feeding skills, nutrition, training


How to cite this article:
Omar OM, Khalil M, Abd El-Ghany HM, Abdallah AM, Omar TE. Intervention program to improve feeding, swallowing, and nutritional problems in children with cerebral palsy. Alex J Pediatr 2017;30:85-93

How to cite this URL:
Omar OM, Khalil M, Abd El-Ghany HM, Abdallah AM, Omar TE. Intervention program to improve feeding, swallowing, and nutritional problems in children with cerebral palsy. Alex J Pediatr [serial online] 2017 [cited 2018 Jul 15];30:85-93. Available from: http://www.ajp.eg.net/text.asp?2017/30/3/85/230763




  Introduction Top


Cerebral palsy (CP) is a posture and movement disorder produced by nonprogressive lesions in the developing brain. CP may affect oral motor skills, leading to problems with sucking, drooling, swallowing, chewing, and speech delay [1],[2]. The feeding problems produced by oral motor dysfunction lead to growth and development delay [3], whereas drooling leads to physical problems and has an effect on social development [4]. The combination of physiotherapy and rehabilitation with caregiver training programs may have a valuable effect on functional independence levels [5].

The aim for management of CP is to increase the quality of life for both the child and family through interventions that increase independence in daily activities, mobility, and nutrition. American Academy of Neurology has published guidelines on the use of pharmacologic management of spasticity in children with CP. However, there is a limited evidence base for most interventions in CP, including those that address nutrition, growth, and development. Despite a range of possible feeding interventions for children with CP, development is deficient on the efficacy, safety, and applicability of these interventions [6].

Normal development of feeding skills and swallowing

First, neonates suckle from the breast (or bottle), but around 3 months, brainstem reflexes, for example, the sucking reflex, disappear, and by around 6 months, infants start eating foods of different consistencies. The oral anatomy changes occur as a result of the oral cavity growth and the descent of laryngeal structures. Between 6 and 12 months, infants can chew and swallow solid or pureed food. Later, the complete swallowing mechanism develops, with the adult swallowing pattern being attained around puberty after the pharynx has reached its adult length [7].

Feeding disorders

A feeding disorder refers to problems in the development of feeding skills, such as sucking from breast or bottle, eating from a spoon, chewing, or drinking from a cup, whereas a swallowing disorder, or dysphagia, refers to problems in one or more phases of the swallowing process ([Table 1]) [8].
Table 1 Swallowing phase and related problems [8]

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Aim

The aim of the study was to design and implement a training program, to evaluate its effectiveness in improving the feeding practices of caregivers of children with CP, and to observe the effect on the level of nutritional status, feeding skills, and distress caused to both during feeding.


  Patients and methods Top


An educational intervention study, including 20 children with CP and their mothers attending Neurology Clinic at Alexandria University Children’s Hospital, was conducted from January 2017 to April 2017.

An informed written consent was obtained from a legal guardian of the patients enrolled. This study was approved by the Medical Ethics Committee of Alexandria Faculty of Medicine.

Inclusion criteria

The following were the inclusion criteria:
  1. Infants and children aged 1–5 years.
  2. Infants with levels III–V disability according to Gross Motor Function Classification System (GMFCS). Level III: children walk by a hand-held mobility device in most indoor settings. They may climb stairs holding onto a railing with supervision or help. Children use wheeled mobility when traveling long distances and may self-push for shorter distances. Level IV: children use methods of mobility that need physical help or powered mobility in most settings. They may walk for short distances at home with physical help or use powered mobility or a body support walker when positioned. At school, outdoors, and in the community, children are transported in a manual wheelchair or use powered mobility. Level V: children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control leg and arm movements [9].
  3. Mothers of selected children had at least a degree of high school education.


Exclusion criteria

Children with congenital diseases (e.g. congenital heart diseases and inborn error of metabolism), chronic diseases (renal failure, pulmonary tuberculosis, and endocrinal diseases), suspected neurodegenerative diseases, and congenital anomalies in the mouth which interfere with feeding (e.g. cleft palate) were excluded from the study.

Twenty patients made up the training group, two of whom dropped out at various stages. The main reasons of drop out were lack of caregiver time, motivation, and child sickness. The children were classified according to etiological classification (prenatal: maternal infection, perinatal: full term or preterm and postnatal: HIE, NICU admission), GMFCS levels, topographic classification, and Modified Ashworth Scale.

Methods of data collection based on recommendations from the literature included the following:
  1. Structured caregiver interviews.
  2. Feeding observations (during practical session to assess and take nutritional history data, e.g. meal time, feeding position … etc.).
  3. Anthropometric measurements [weight, height/length, and tibial length (TL)].
  4. Calculation of BMI.


TL: Children with CP often grow poorly, and assessment of growth is further complicated by two main difficulties. First, children may have scoliosis, joint contractures, muscular weakness, and/or involuntary movements that make standing or lying straight difficult. Therefore, accurate measures of height or recumbent length are not always possible in this population. Second, because of atypical growth patterns, generally accepted reference charts for typically developing children may not be suitable for use in children with CP. Owing to these difficulties, segmental lengths such as TL are frequently used as an alternative [10].

Stature=(3.26×TL)+30.8 (the technical error is ±1.4 cm).

The training program sessions, scientific material, and schedule were designed by our team with help and supervision from Dr MelAdams.

Data had been collected at the following two levels:
  1. Preliminary assessment to collect initial data:
    1. Full history taking: personal data, medical history, hospital admission, causes of CP, neonatal history, developmental history and nutritional history (mode of feeding; food consistency/adequacy; feeding patterns such meal time, frequency of meals, position during feeding, and eating and drinking ability classification system (EDACS), which describes five distinct levels of ability using the key features of safety and efficiency: level I: eats and drinks safely and efficiently, level II: eats and drinks safely but with some efficiency limitations, level III: eats and drinks with some safety limitations, maybe efficiency limitations, level IV: eats and drinks with significant safety limitations, and level V: unable to eat or drink safely − tube feeding may be used to deliver nutrition [6]); assessment of feeding skills corresponding to gross and fine motor development [11]; and associated feeding problems).
    2. Clinical examination: degree of spasticity was assessed using Modified Ashworth Scale (MAS), where grade 0: no increase in muscle tone, grade 1: slight increase in muscle tone, manifested by a catch and release or by minimal resistance at the end of the range of motion when the affected part(s) is moved in flexion or extension, grade 1+: slight increase in muscle tone, manifested by a catch, followed by minimal resistance throughout the remainder (less than half), grade 2: more marked increase in muscle tone through most of the range of motion, but affected part(s) easily moved, grade 3: considerable increase in muscle tone and passive movement difficult, grade 4: affected part(s) rigid in flexion or extension.
  2. Following the end of training, 3-month period had been dedicated to ensure consistency of practice of the trained mothers through monthly follow-up sessions.
  3. Post-training final evaluation to collect data regarding developed competencies of the mothers and children-feeding practices following implementation of the training program.


Initial advice was given to caregivers immediately after the baseline assessment and focused on the key caregiver feeding practices which were compromising safe and responsive feeding and included some degree of demonstration (pictures, acting during practical sessions, and videos). Responsive feeding can be defined as a back-and-forth understanding between the child and caregiver and has four steps: (a) the creation of a structured routine, in which expectations about eating are made known to the child, (b) the signaling of cues by the child, through facial expressions, actions, or speaking, to the caregiver, (c) the quick response of the caregiver to these signals in a supportive, dependent, and appropriate manner, and (d) the understanding of the caregiver response by the child in a predictable manner.

The training program had been implemented to the target group of mothers over 5 days, 15 h (3 h each day). Each training session was divided into a formal educational part and a practical part involving supervised feeding, thereby providing general information relevant to all of the caregivers as well as tailored information relevant to the specific needs of each child-caregiver pair. The former included training on diet and the principles of safe and responsive feeding practices, including feeding manner and caregiver interaction. Caregivers were observed by our team during feeding and given individual training on the following:
  1. Appropriate position during feeding (appropriate/inappropriate during all meals, some, or none of meals): the appropriate position has goals like symmetry and alignment should be respected as much as possible; the child should feel comfortable and be stable but not stuck. It may be helpful to put the child into a more flexed, symmetrical position and also look at and use two hands for a task at a table placed in the front. The appropriate positioning facilitates eye contact, child communication, and social interaction and promotes comfort and relaxation.
  2. Frequency and duration of meal times.
  3. Mode of feeding (oral, nasogastric, or gastrostomy tube).
  4. Food: consistency and adequacy.
  5. Associated feeding problems.
  6. Newly obtained and improved feeding skills.
  7. Utensils used during feeding and drinking ([Table 2]).
    Table 2 Classification of appropriate versus inappropriate utensils

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  8. Feeding practices (including feeding manner and caregiver interaction).
  9. Recall of 24 h feeding and meals.
  10. Caregiver feeding skills plan for next month.


Training methodology was as follows: lectures, workshops, discussions, brain storming and demonstrations, and supervised feeding sessions.

Training tools used were as follows: slides, computer data show, leaflets, handouts, posters, videos, feeding utensils, and food.

Statistical analysis of the data

Data were fed to the computer and analyzed using IBM SPSS software package, version 20.0 (IBM Corp., Armonk, New York, USA) [12],[13]. The Kolmogorov–Smirnov, Shapiro, and D’agstino tests were used to verify the normality of distribution of variables, Comparisons between the different stages for categorical variables were assessed using McNemar–Bowker and marginal homogeneity tests. Paired t-test was assessed for comparison between different periods for normally distributed quantitative variables, whereas Wilcoxon signed ranks test was assessed for comparison between different periods for abnormally distributed quantitative variables. The significance of the obtained results was judged at the 5% level.


  Results Top


A total of 20 infants and children were recruited to the study. Their median age was 2.5 years. Overall, 70% of them were boys and 30% were girls. Postnatal causes were the most frequent causes responsible for CP in this study (75%). Level V based on GMFCS was present in 55% of the studied children. Topographically, most children (90%) had a bilateral spastic type, and half of the children had grade III according to MAS ([Table 3]).
Table 3 Distribution of children with cerebral palsy according to baseline characteristics and nutritional status

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Nutritional status of children is shown in [Table 4]. Most cases were malnourished either moderately (30% of children) or severely (45% of children).
Table 4 Distribution of children with cerebral palsy according to nutritional status

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Associated feeding problems were divided into four phases: preparatory phase, oral, pharyngeal phase, esophageal phase, and others. In preparatory phase, we found an inability of the child to express hunger and thirst in 30% of the cases, cry and extensor dystonia in 40% of the cases, an inability of self-feeding in 80% of the cases, and poor head/trunk control during feeding in 70% of the cases. In oral phase, drooling was found in 60% of the cases, chewing problems in 55% of the cases, persistent tongue thrust in 30% of cases, and bad oral hygiene, residue in mouth cavity, and dental caries in 70% of the cases. In pharyngeal phase, aspiration and recurrent chest infection was seen in 48% of the cases and cough and choking in 25% of the cases. In esophageal phase, regurgitation and vomiting were present in 75% of the cases and constipation and abdominal pain in 80% of the cases ([Table 5]).
Table 5 Distribution of children with cerebral palsy according to feeding problems

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Regarding feeding problems, most studied children (85%) experienced more than one feeding problems like aspiration, recurrent chest infections, regurgitation, and vomiting. Moreover, regarding food consistency (semisolid, semisolid/solid, and semisolid, solid, and liquid food), semisolid was the most common type of food in 65% of cases, followed by semisolid and solid in 20% of cases. Based on EDACS levels, level III was found in half of the studied children (50%). This was followed by levels IV and V as both were encountered in 40 and 10% of the studied children, respectively ([Table 5]).

Most of the studied children had inappropriate position during all the meals (75%), and the median meal time was 60 min ([Table 6]). A total of 20 infants and children were recruited to the study, and their median age was 2.5 years. Overall, 70% of them were boys and 30% were girls. Postnatal causes were the most frequent causes responsible for CP in this study (75%). Level V based on GMFCS was present in 55% of children. Topographically, most children (90%) had a bilateral spastic type, and half of the children had grade III according to MAS ([Table 3]).
Table 6 Distribution of children with cerebral palsy according to feeding practices

Click here to view


Nutritional status of children is shown in [Table 4]. Most cases were malnourished either moderately (30% of children) or severely (45% of children).

Associated feeding problems were divided into four phases: preparatory, oral, pharyngeal, esophageal phases and others. In preparatory phase, we found an inability of the child to express hunger and thirst in 30% of the cases, cry and extensor dystonia in 40% of the cases, an inability of self-feeding in 80% of the cases, and poor head/trunk control during feeding in 70% of the cases. In oral phase, drooling was found in 60% of the cases, chewing problems in 55% of the cases, persistent tongue thrust in 30% of cases, and bad oral hygiene, residue in mouth cavity, and dental caries in 70% of the cases. In pharyngeal phase, aspiration and recurrent chest infection was seen in 48% of the cases and cough and choking in 25% of the cases. In esophageal phase, regurgitation and vomiting were present in 75% of the cases and constipation and abdominal pain in 80% of the cases ([Table 5]).

Regarding feeding problems, most studied children (85%) had more than one feeding problems like aspiration, recurrent chest infections, regurgitation, and vomiting. Moreover, regarding food consistency (semisolid, solid/semisolid, or solid/semisolid/liquid food), semisolid was the most common type of food in 65% of cases, followed by semisolid and solid in 20% of cases. Based on EDACS levels, level III was found in half of the studied children (50%). This was followed by levels IV and V, as both were encountered in 40 and 10% of the studied children, respectively ([Table 5]).

Most of the studied children had inappropriate position during all the meals (75%) and the median meal time was 60 min ([Table 6]).

Regarding changes in the children and the caregivers feeding practices during preliminary assessment and post-training final evaluation, it was found that the percentage of children with appropriate feeding position was significantly higher in final evaluation (66.7%) compared with preliminary evaluation (5%), and the median meal time was significantly shorter in final evaluation (42.5 min) when compared with preliminary evaluation (60 min). There was no significant difference in mode of feeding between the studied children with CP in preliminary and final evaluation ([Table 4] and [Figure 1] and [Figure 2]) feeding position.
Figure 1 Distribution of the studied cases according to feeding position in preliminary evaluation and final evaluation after 3 months.

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Figure 2 Distribution of the studied cases according to meal time duration in preliminary evaluation and final evaluation after 3 months.

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The caregivers succeeded in providing food of thicker consistency but there was no statistically significant difference in food consistency between studied children with CP in preliminary and final evaluation (P=0.074), and all the caregivers of studied children with CP reported that their children experienced overall inadequacy of food in preliminary and final evaluations ([Table 7]).
Table 7 The effect of intervention on feeding problems and feeding practices among children with cerebral palsy

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There was no significant difference in the number of feeding problems, EDACS level, and the mean weight for age Z score among studied children in the preliminary and final evaluations ([Table 7] and [Table 8]).
Table 8 The effect of intervention on nutritional status of children with cerebral palsy

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The percentage of children and their caregivers gaining new feeding skills was significantly higher in final evaluation (38.9%) compared with the preliminary evaluation (0%) (P=0.016). The percentage of children using the utensils appropriately was significantly higher in final evaluation (66.7%) compared with the preliminary evaluation (15%) (P=0.004) ([Table 7]).


  Discussion Top


Feeding difficulties are common in children with CP, which affects growth, nutrition, general health, developmental outcomes, and quality of life [14].

In the current study, the percentage of children with appropriate feeding position improved significantly in the final evaluation (66.7%) compared with the preliminary evaluation (5%). At the initial evaluation, most children in the study were likely to be fed in an inappropriate position (lying or breastfeeding position, than semireclined or upright). Similarly, Adams et al. [15] reported that caregivers were successful in changing the overall position in which they fed their children for the majority of the time after 2.5 months.

The median meal time spent by the caregiver for each meal was significantly shorter in final evaluation (42.5 min) compared with the preliminary evaluation (60 min). The percentage of children using the utensils appropriately was significantly higher in final evaluation (66.7%) compared with the preliminary evaluation (15%) (P=0.004). Similar to the study by Adams et al. [15], the average meal length reported within each meal was between 30 and 60 min. This was reduced after training to 30–40 min. The study by Gisel [16] showed a decrease in meal time after 10 weeks of training to 30 min.

In the present study, there was no significant difference in the mode of feeding between studied children with CP in preliminary and final evaluations (P=1.000). This is quite similar to the study by Abdelbary [17] who reported that the most common mode of feeding between CP children oral mode was 60%. This result may be attributed to the severe degree of spasticity, the severity, and associated impairment of CP children. Based on EDACS levels to measure the level of assistance required for feeding, there was no significant difference between the studied children in preliminary and final evaluations (P=1.000).

In the present study, all the caregivers of studied children with CP reported that their children had inadequate amount of food in preliminary and final evaluations. This is supported by Oxford the Feeding Study [18] where all mothers reported that their children had no adequate amount of food, and it was very hard to measure adequacy of food accurately, because it was very subjective and relied on mothers’ assessment.

In the current study, regarding change in associated feeding problems in the studied children with CP, there was no significant difference in feeding problems (chewing, swallowing, drooling, independent feeding, and aspiration) between preliminary and final evaluations (P=0.500). This is in contrast to the studies by Adams et al. [15] and Borkowska [19], which stated that their training groups showed a significant improvement in chewing, swallowing, drooling, independent feeding, and feeding problems. This difference may be attributed to the short duration of the training, different educational levels, and the low socioeconomic level of the caregivers in the current study.

The caregivers succeeded in providing food of thicker consistency to children with CP in final evaluation compared with preliminary evaluation but with no statistically significant difference (P=0.074). This finding is similar to that of the study by Gisel [16], who reported that all the studied children were fed semisolid food after training, and it was hard to tolerate liquids.

In the present study, there was no significant difference in anthropometric measurements (weight and height) between initial evaluation and end of training; this may be attributed to inappropriate dietary intake in all types of CP, short training duration, and low socioeconomic classes.

In the present study, newly gained caregiver feeding skills (feeding manner, communication during feeding, behavior at meal times, type of food, orientation of feeding problems and how to manage, stress during meals, and utensils to be used) and child feeding skills (chewing, swallowing, self-feed, use of utensils, improve oral-motor motility, choking, drooling, and communication during feeding) were seen through our training. There was a higher statistically significant difference in the caregiver feeding skills gained during feeding through supervised feeding sessions between the studied children with CP in preliminary and final evaluations (P=0.016).


  Conclusion Top


Based on the results of the present study, we found that the training program has positive consequences and beneficial effect on both children and caregivers.

Better outcomes can be expected owing to longer training period, the younger and less severely disabled the child, when the caregivers have more time available for caregiving, and when they are supported by a larger family. In terms of motivation to attend, this may be affected by mental well-being and perceived usefulness of the training as well as financial and care burdens.

The following were the study’s strength points:
  1. A small number of the participant gave chance to good training and individual focus and good assessment.
  2. Practical sessions were very successful.
  3. Demonstrated parents handouts and real videos were very helpful.
  4. Monthly follow-up sessions.


Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

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Adams MS, Khan NZ, Begum SA, Wirz SL, Hesketh T, Pring TR. Feeding difficulties in children with cerebral palsy in Bangladesh. Doctor thesis, University College London. 2012; 4.1:174.  Back to cited text no. 15
    
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    Figures

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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8]



 

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